Jack, 4, and his sister Alice, 1, were both born prematurely and Alice suffers from cerebral palsy
Six days after his birth, he needed life-saving surgery on his bowel, then endured many other serious health problems and spent four-and-a-half months in hospital.
“The staff said they’d never seen a baby so small,” recalls his mum Jenny, 34, from Knowle, West Midlands.
Although Jack has since made remarkable progress and is now a happy, inquisitive pre-schooler, many others are not so fortunate.
More than 61,000 babies are born prematurely each year in the UK and, tragically, about 1,000 will die.
Children born prematurely have a higher risk of cerebral palsy, blindness and learning difficulties
Preventing premature birth remains a major challenge to modern medicine
Those who survive are at risk of developing cerebral palsy, blindness and learning difficulties and are more susceptible to problems during adulthood, such as high blood pressure and diabetes.
“The reasons why women go into labour early are not fully understood,” says Professor Nigel Klein of the UCL Great Ormond Street Institute of Child Health.
“Preventing premature birth remains a major challenge to modern medicine.”
Certainly for Jenny and husband Matthew, 38, there was no indication that anything was amiss.
High blood pressure and diabetes in adulthood is more prevalent in individuals born prematurely
“I had an easy pregnancy with no issues at all,” she says.
“But at 25 weeks, I haemorrhaged and was rushed into hospital.
“I wasn’t in active labour and I was so naïve that I thought as soon as they stopped the bleeding, I’d just go home,” she recalls.
“I was a teacher and carried on working in hospital on my phone. I had no experience of prematurity and didn’t understand the ramifications.”
Children born prematurely have an increased risk of collapsed lungs, brain bleeds and infections
Yet two days later Jack was delivered by emergency caesarean section.
“The neonatal doctors told us there was a 50/50 chance our son would survive,” Jenny says.
Jack was immediately transferred to New Cross Hospital in Wolverhampton where he could receive the specialist care he needed in the Neonatal Intensive Care Unit and Jenny was taken by ambulance to join him, 12 hours after her surgery.
Within his first few days Jack suffered a collapsed lung and brain bleeds and developed the deadly infection necrotising enterocolitis (NEC), where tissues in the intestine become inflamed and start to die.
NEC is the most common surgical emergency in newborn babies and tends to affect babies born prematurely more.
Jack was transferred to Birmingham Children’s Hospital for emergency surgery.
It took specialist staff four hours to stabilise him and transfer him from the hospital incubator to the transport incubator.
“It was so traumatic,” says Jenny.
Necrotising enterocolitis is an infection where intestinal tissue becomes inflamed and starts to die
Although the surgery to remove part of Jack’s bowel was a success, he went on to suffer serious complications from his condition.
“Jack had seven operations in his first six months,” his mum says.
Against the odds, Jenny and Matthew were finally allowed to take him home when he was four-and-a-half months old.
“He was still on oxygen, so the canisters came too,” Jenny says.
Although in many cases the causes of premature birth are unknown, researchers led by Professor Nigel Klein and funded by the children’s charity Action Medical Research are developing a new way to predict, very early in pregnancy, which women are at risk of premature birth, so they can be offered the care they need to prolong their pregnancy.
Earlier research funded by the charity revealed that women who lack white blood cells at the cervix are more likely to give birth prematurely.
Now the team is developing a new test to detect these cells early in pregnancy.
“We hope our new test will mean women who are found to be at high risk of giving birth early can be monitored more closely and offered extra treatment with the aim of prolonging their pregnancy,” says Professor Klein.
Nearly four now, Jack is thriving but due to his early birth he has had developmental delays.
He has chronic lung disease and there are concerns about his eyes.
He may be affected by epilepsy due to brain bleeds as a newborn.
“Physically he is behind but he can walk, run and jump. He started speaking age two,” says Jenny, who also has a one-year-old daughter Alice, who was born prematurely and has cerebral palsy.
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The family supports medical research into prematurity.
“Without research, we wouldn’t have medical advances and Jack probably wouldn’t be here,” she says.
“Anything that helps identify why women go into labour too soon is vital.”
To support the Action Medical Research Saving Tiny Lives Appeal visit fund.action.org.uk/ prematurebirth